Guest guest Posted April 17, 2002 Report Share Posted April 17, 2002 Have you done Fast FOrward and Earobics??? (mostly for receptive, I think) still no speech > Hi all, just wanted to know if there was anybody out there that is > experiencing there child having no speech. He's on Dr. Gs protocol and > while making good progress in several areas, speech still isn't there. > It's not just speech, it's receptive as well. My son is 8 and has been > with Dr. G. for 1 1/2 years. He has always been classified severe > autistic mainly because of his severe lack of language understanding. > We've done the hearing check and where they do the graph to see inside > his ear. Everything appears normal. He's a very visual learner. We've > tried PECs and he uses it somewhat and sign language is too > complicated for him now. Any suggestions, would be greatly > appreciated. If he could just get the receptive part I would be > content. Thanks in advance. > > Sincerely, > D. Brayman > > > > > Responsibility for the content of this message lies strictly with > the original author, and is not necessarily endorsed by or the > opinion of the Research Institute. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2002 Report Share Posted April 17, 2002 All, I have been meaning to ask on this list if anyone has any experience with the use of prednisol (steroid/anti-inflammatory/immune suppressant)? I realise this may be controversial on this list, but if the immune system is indeed overactive in some cases there may be some justification, although not without due caution. V. Singh Ph.D has found elevated Myelin Basic protein autoantibodies in " upto 80% " of cases of autism, and has coined the term " autoimmune autism " , and clearly there would be a case for the use of steroids in that respect, though maybe not if there was something else lurking where that same immune response might be needed. MBP antibodies are associated with multiple sclerosis, and it does not seem that this is reported in association with autism, however, the neuro-immune activation that would be expected as a result of MBP auto-antibodies does not seem to be being addressed, or is it? D. Brayman, your post prompted me to ask because of the speech gains reputedly associated with prednisol: " To date, prednisone appears to be one of the only medications that has a high rate of success in treating the underlying cause of speech loss or lack of speech in autism. " http://aheadwithautism.com/pred01.html I'm not trying to sell prednisol or the concept, but it does seem that however much you aid the immune system to deal with pathogens, and even if you got to the point where you had eliminated absolutely all, if MBP antibodies are present then you will still get the immune activation and associated cytokines that might well be contributing to speech problems. Prednisol would serve to suppress this activation. Thanks, Jon. There are other references for Singh around, but here is one of them: http://www.healthboards.com/autism/412.html -------------------------------------------------------------------------------- still no speech Hi all, just wanted to know if there was anybody out there that is experiencing there child having no speech. He's on Dr. Gs protocol and while making good progress in several areas, speech still isn't there. It's not just speech, it's receptive as well. My son is 8 and has been with Dr. G. for 1 1/2 years. He has always been classified severe autistic mainly because of his severe lack of language understanding. We've done the hearing check and where they do the graph to see inside his ear. Everything appears normal. He's a very visual learner. We've tried PECs and he uses it somewhat and sign language is too complicated for him now. Any suggestions, would be greatly appreciated. If he could just get the receptive part I would be content. Thanks in advance. Sincerely, D. Brayman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 Hi, Just wanted to say that my son also can identify with yours. We have been a patient of Dr. G for just over 2 years. He has improved, however speech seems to be one of our final challenges. My son also uses pecs. He is turning 6 tomorrow. My understanding of giving prednisone to your child is that the steroids when given further suppress the immune system so that if you are treating a virus (per Dr. G) that giving the steroid will only make the virus worse. We are hoping for speech, if you have any further info, let me know!! Thanks, Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 I spoke Dr. Mott at Ahead with Autism and talked about the recoverery rates using steroids. Ultimately I believe it was about 6% held onto their improvements. I think that there is a very small subgroup that may benefit and it warrents further investigation. The side effects of long term steroid use were more than I was willing to risk on my son. still no speech > > > Hi all, just wanted to know if there was anybody out there that is > experiencing there child having no speech. He's on Dr. Gs protocol and > while making good progress in several areas, speech still isn't there. > It's not just speech, it's receptive as well. My son is 8 and has been > with Dr. G. for 1 1/2 years. He has always been classified severe > autistic mainly because of his severe lack of language understanding. > We've done the hearing check and where they do the graph to see inside > his ear. Everything appears normal. He's a very visual learner. We've > tried PECs and he uses it somewhat and sign language is too > complicated for him now. Any suggestions, would be greatly > appreciated. If he could just get the receptive part I would be > content. Thanks in advance. > > Sincerely, > D. Brayman > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 There are two major problems with using steroids on children. The first is the terrible side effects that occur with anyone who uses steroids on a long term basis. The second is that because of the dysfunctional immune system kids have subclinical viral, fungal, and sometimes bacterial infections on board. Shutting the immune system more will only give free reign to those agents. That would be an extremely dangerous thing to do. Kathy -NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 I have an 11 year old who is also non verbal making slow progress in other areas but still no speech. He does sometimes vocalize alot but not words. I know exactly how you feel. --- ldugua <Ldugua@...> wrote: > Have you done Fast FOrward and Earobics??? (mostly > for receptive, I think) > still no speech > > > > Hi all, just wanted to know if there was anybody > out there that is > > experiencing there child having no speech. He's on > Dr. Gs protocol and > > while making good progress in several areas, > speech still isn't there. > > It's not just speech, it's receptive as well. My > son is 8 and has been > > with Dr. G. for 1 1/2 years. He has always been > classified severe > > autistic mainly because of his severe lack of > language understanding. > > We've done the hearing check and where they do the > graph to see inside > > his ear. Everything appears normal. He's a very > visual learner. We've > > tried PECs and he uses it somewhat and sign > language is too > > complicated for him now. Any suggestions, would be > greatly > > appreciated. If he could just get the receptive > part I would be > > content. Thanks in advance. > > > > Sincerely, > > D. Brayman > > > > > > > > > > Responsibility for the content of this message > lies strictly with > > the original author, and is not necessarily > endorsed by or the > > opinion of the Research Institute. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 is 10 and started with Dr G. in 1997. she is still non verbal but has made much progress in communicating and many other areas. we are still working on oral motor for language and are getting slow progress Tina M. Hendrix Cure2000@... Vice-President, California Coalition Neuro-Immune Dysfunction Syndromes Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, CFS, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Thanks Doug, 6% does not sound like much, but one way of looking at it is that it represents a significant therapy for 6%, that must equate to thousands, and then if you consider those that did improve but failed to maintain it. I see it as a probe drug, and if you get an improvement (which does not take long from what I can gather) then it points the way to finding a more long-term therapy. I have drawn attention to MBP antibodies (which are detectable in upto 80% of those with autism), because no matter how much you combat infections you will always have MBP, which for all intents and purposes is " treated " as a pathogen, and you'd get autoimmune-, which is bad for two reasons: 1.. Improper myelination. 2.. The cytokine release associated with immune activation and tissue damage. Because the brain is such a concentrated area of myelin, it seems to stand to reason there would be concentrated immune activity in this region, and this would significantly increase the chances of cytokines such as IL-1 having an effect on the Hypothalamus-Pituitary-Adrenal-axis. I think this is getting close to being a model of autism, but does not explain why we don't see symptoms of multiple sclerosis (so far as I know) but yet have these antibodies too. Is the only probable explanation that the increased presence of cytokines in cases of autism actually causing the hypothalamus to suppress the immune system, and leaving the door open to other invaders? It is a complex issue, but this one below might give you an idea of what I'm driving at: -------------------------------------------------------------------------------- Ref ID : 1587 11. Sternberg EM, Chrousos GP, Wilder RL, Gold PW. The stress response and the regulation of inflammatory disease. Ann Intern Med 1992; 117: 854-866. Notes : AB - The molecular and biochemical bases for interactions between the immune and central nervous systems are described. Immune cytokines not only activate immune function but also recruit central stress- responsive neurotransmitter systems in the modulation of the immune response and in the activation of behaviors that may be adaptive during injury or inflammation. Peripherally generated cytokines, such as interleukin-1, signal hypothalamic corticotropin-releasing hormone (CRH) neurons to activate pituitary-adrenal counter- regulation of inflammation through the potent antiinflammatory effects of glucocorticoids (my note: prednisol is synthetic replacement). Corticotropin-releasing hormone not only activates the pituitary-adrenal axis but also sets in motion a coordinated series of behavioral and physiologic responses, suggesting that the central nervous system may coordinate both behavioral and immunologic adaptation during stressful situations. The pathophysiologic perturbation of this feedback loop, through various mechanisms, results in the development of inflammatory syndromes, such as rheumatoid arthritis, and behavioral syndromes, such as depression. Thus, diseases characterized by both inflammatory and emotional disturbances may derive from common alterations in specific central nervous system pathways (for example, the CRH system). In addition, disruptions of this communication by genetic, infectious, toxic, or pharmacologic means can influence the susceptibility to disorders associated with both behavioral and inflammatory components and potentially alter their natural history. These concepts suggest that neuropharmacologic agents that stimulate hypothalamic CRH might potentially be adjunctive therapy for illnesses traditionally viewed as inflammatory or autoimmune AD - National Institute of Mental Health AD - Bethesda AD - MD 20892 UI - 93036936. http://www.banick.com/~julie/allref.txt -------------------------------------------------------------------------------- Nothing conclusive, but the possibilities do seem to be there. Jon. still no speech > > > Hi all, just wanted to know if there was anybody out there that is > experiencing there child having no speech. He's on Dr. Gs protocol and > while making good progress in several areas, speech still isn't there. > It's not just speech, it's receptive as well. My son is 8 and has been > with Dr. G. for 1 1/2 years. He has always been classified severe > autistic mainly because of his severe lack of language understanding. > We've done the hearing check and where they do the graph to see inside > his ear. Everything appears normal. He's a very visual learner. We've > tried PECs and he uses it somewhat and sign language is too > complicated for him now. Any suggestions, would be greatly > appreciated. If he could just get the receptive part I would be > content. Thanks in advance. > > Sincerely, > D. Brayman > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Thanks Kathy, I do see the dangers, but there must be a lesson to learn from the hard-to-dispute fact that steroids do bring about an improvement, despite the probability they would serve to suppress the immune system. What isn't clear however is what is being done for the high incidence of MBP autoantibodies, is there a reliable means of countering that which does not involve immune suppression? On the one hand we are trying to fend-off various infections, and on the other we are overlooking the effect of an immune attack on brain tissue, could it be that they have a suppressed immune system BECAUSE they have autoantibodies? It is incredible that familial studies report such high incidence of autoimmune disorders associated with autism. Could it be that someone with autism is that bit better at countering/suppressing auto-immune activity but is highly susceptible to it? Jon. Re: still no speech There are two major problems with using steroids on children. The first is the terrible side effects that occur with anyone who uses steroids on a long term basis. The second is that because of the dysfunctional immune system kids have subclinical viral, fungal, and sometimes bacterial infections on board. Shutting the immune system more will only give free reign to those agents. That would be an extremely dangerous thing to do. Kathy -NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Jon, is a system disorder. In order to treat it you have to treat the immune system and get it back into homeostasis. Remember this is a system that is so exquisitely sensitive that it can react within seconds (think anaphylactic reaction), make and store antibodies for 50 or so years, react against many things at once. It is also probably the least explored of all the systems. ASD is a symptom of a hyporeactive and hyperactive immune system. Giving a steroid possibly depresses the hyperactive side but does nothing for the hyporeactive side. So IF you have temporarily fixed the problem, and I think that is a major stretch to say that you have, you have only fixed half of it. Kids on the protocol get better and a lot of them get normal. The immune system is made up of a lot of different cells. Do we actually know all the cytokines? Do we actually know what they do? How they interact? Do kids on steroids stay better after the steroids are removed? For how long? What are the long term effects of the drug? Actually we know what the long term effects of steroids are on children. Kathy -NNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2002 Report Share Posted April 27, 2002 Researchers find gene linked to MS, arthritis " Lack of Corticotropin-Releasing Hormone. Some people may have a genetic deficiency of a hormone known as corticotropin-releasing hormone (CRH), which produces corticosteroids, other hormones that suppress the inflammatory process " In some respects MS tharapy might be misguided since steroids shut-down CRH, and doing so might thereby actually serve to perpetuate the situation because CRH kills activated T cells. Quote next> ------------------------------------------------------------------------ Maternal tolerance Embryonic and endometrial corticotrophin-releasing hormone promotes implantation and maintenance of early pregnancy by killing activated T cells. Corticotrophin-releasing hormone (CRH) participates in the implantation of embryos and early pregnancy tolerance via pathways that remain poorly understood. In October Nature Immunology, Makrigiannakis and colleagues from University of Crete School of Medicine, Greece, show that locally produced embryonic and endometrial CRH promotes implantation and maintenance of early pregnancy primarily by killing activated T cells. Makrigiannakis et al. studied isolated primary human extravillous trophoblast cells and found that antalarmin, a CRH receptor type 1 antagonist, decreased FasL expression and promoted apoptosis of activated T lymphocytes, an effect potentiated by CRH. In addition, they found that female rats treated with antalarmin had a reduced number of successful pregnancies and a diminished endometrial FasL expression, whilst antalarmin treated mothers that lacked T cells did not reject the embryos (Nat Immunol 2001, DOI: 10.1038/ni722). These results suggest a potential cause of female infertility and may also lead to the development of a new class of nonsteroidal contraceptives that prevent pregnancy in its very early stages. Tudor Toma (t.toma@...) Links for this article Makrigiannakis A, Zoumakis E, Kalantaridou S, et al.: Corticotropin-releasing hormone promotes blastocyst implantation and early maternal tolerance. Nat Immunol 2001, DOI: 10.1038/ni722 http://immunol.nature.com University of Crete School of Medicine http://www.uch.gr/Tmhmata/MEDICINE/index.html http://www.biomedcentral.com/news/20011010/02 ------------------------------------------------------------------------------ Besides their direct immune activity, steroid hormones can actually activate the Hippocampus, an area involved in memory and learning. This, to be truthful is not an absolute rule since overstimulation can serve an opposite role, and some mental impairments are associated with Cushings. It does seem a to be a fine line, but seemingly one that could relatively easily be tested for. Jon. Quote Link to comment Share on other sites More sharing options...
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